Monthly Archives: June 2016

My Fashion Statement

What do you never leave home without? Is it a purse? Your wallet? Keys? Yeah, I have all of those things too. But September through May, and dozens of other days outside of those months, I always have something else. I never, ever leave home without a heated neck wrap.

While women collect purses, I collect neck wraps. Currently, I have six. Five live at home and I have an emergency one that lives at work. Like purses, mine range in colors, sizes, shapes and have different contents inside. But the similarities end there. My neck wraps are not as fun as my purses. They are a necessity for me because I have cervical dystonia.

Cervical dystonia is a neurological disorder that causes my shoulder muscles to stay in a semi-permanent shrug position. This shoots pain up my neck and limits my ability to turn my head. So, my wrap serves two purposes: to provide heat to my neck and shoulders and provides weight to help me keep my shoulders down. Per my neurologist: “If it is less than 70 degrees outside go nowhere without one on, no matter what!” And I do. Always. One even gets packed when I head to the beach in the middle of summer, just in case.

Wearing one consistently for five years, I sometimes get asked questions and that’s great. I always encourage people to ask questions because it is a way to raise awareness.

Some regular questions:

What do you call that thing around your neck?

A: It’s my tube.

How often do you heat it?

A: When I am teaching: right before I leave my house for work, during my special (10:30), at lunch (12:00), after school (3:30) and then countless times in the evening. Pretty much as soon as it cools off, back in the microwave it goes.

Why do you have so many?

A: Because I have a dystonia brain which means my memory sucks. I can’t keep track of anything. Anything. My life would be so much easier if I could have five phones too!!

How long do they last?

A: Until I burn it in the microwave. That scenario plays out like this: “What is that burning smell? It’s horrible, I can’t escape it.  Oh wait, it’s me.” This usually occurs around 6 months. And the smell is SO much worse than burning popcorn!

What is inside?

A: Dried rice works best for me. It molds well to my neck. I do have one that has dried corn in it.

Do you ever freeze it instead of heating it?

A: NO, NO, NO!!!  Cold is the worst possible thing for my dystonia.  The mere thought of a cold tube around my neck makes me shudder.   

Do they ever break?

A.Only at the worst possible times. Like when you are out grocery shopping and a pile of dried rice falls to the floor in the baking aisle.  Try explaining that one to an employee.  Truthfully, they rarely break and I am hard on them.

The most common question asked:

Your wrap is so cute and feels so soft. I bet this feels really good when it is all warm like that?

A: I know its original purpose was to provide soothing heat for someone (who doesn’t have chronic pain) after a rough day. For me, it is a necessity to maintain a full-time job as a teacher and a mother. It is also cumbersome and often uncomfortable. It’s not something I would say I enjoy lugging around my neck hour after hour.  But it is a necessity.

 

And the one question that I ask my family at least five times a day (often yelling so everyone in the house can hear me), “Does anyone know where my tube is? I can’t find it! Again.”

 

A big thanks to Patient Worthy for publishing this piece!

My Dystonia Fashion Statement

 

I’m done.

I am so angry right now!!! Pissed. Yelling, throwing things. So mad. Why? Because I am exhausted. I am totally and completely, fall into bed and not getting back up, exhausted. And that infuriates me!

My school year ended a week ago today. I’m on summer break! For most teachers this means a time to relax, vacation, take classes, and be at home with their children. And while all these things apply to me, summer means something different altogether. Summer means remission.

As someone living with early onset cervical dystonia, my school year is filled with pain and dizziness. Stress, movements, noise, and the constant activity required to maintain a 4th-grade classroom are not good for my dystonia. My husband tells me to quit my job. My neurologist tells me to quit my job. But it’s the only thing I have ever wanted to doIf I quit my job, I quit my life. And despite the pain and dizziness, I love my job. It makes me happy. Not to mention, over the last 3 school years, my symptoms have lessened as I continue to find ways to move my body that avoid triggers.

Summer is my saving grace. When you take out the factors involved in teaching, the severity of my cervical dystonia drops. A lot.

In summer, I am warm and my body loves being warm. I can abandon my heated, cumbersome neck wrap that I am tied to from September to May. The warmth of the sun and less stress, helps release my involuntary shoulder shrug, which brings much needed pain relief.

A day of teaching requires constant head and neck movements up and down and side to side. I took those simple movements for granted until doing them brought on months of dizziness. Summer brings a slower pace which makes my neck and shoulders happy. The episodes of dizziness that can last for months during the school year reduce to mere minutes of dizziness that are few and far between. Not to mention I have begun weaning my high dose of Valium down to a smaller dose for the summer. And as a walking Valium zombie, you have no idea how happy that makes me!

 

This is all so fantastic.  So why am I upset right now?

Well, summer also serves as a mile marker for my life. A chance for me to look back on where I was this time last year and frankly, I was not this exhausted last summer. I did not have this much trouble walking last summer. I did not have this degree of language difficulties last summer. And while I can try to deny these changes, they are still there. Taking the girls to the waterpark on Monday resulted in an evening with much time spent on the couch. A morning at the mall on Tuesday resulted in being too tired to wash my hair that evening. A wish of taking my girls to the zoo to see the baby animals today became just that, a wish. Because I just can’t do it this week.

One week into summer finds me completely exhausted and frustrated. That’s my doing. I pushed too hard. So, I will adjust just like I always do. I’ll swap out school symptoms for summer symptoms. And I’ll throw myself a pity party and concede temporary victory to my dystonia. But it will be temporary because I was able to take my girls to the waterpark. I did get to take them to the mall.  This may not always be the case.

And the zoo will still be there next week.